Doc Searls: patient as platform and “point of integration”

Note added afterward by e-Patient Dave:Everyone, please read this post well and understand it well. I think this is a signal moment in our history. As much as I’ve believed in the principles developed by Doc Tom and his e-Patient Scholars Working Group, this issue takes it to a level I’d never imagined. I never knew Doc Tom; thanks to Jon Lebkowsky for tying this together so well.

Open Source advocate Doc Searls of Linux Journal has posted a classic e-patient story, noting the closed and proprietary nature of the healthcare system, calling it “a disease that has to be cured.” Doc was mobilized by his own experience with a procedure called an ERCP (Endoscopic Retrograde Cholangiopancreatography), which had a “1 in 20 chance” of causing pancreatitis. Doc proved to be a one in twenty, and after battling pancreatitis learned that the MRI that led to the ERCP was misinterpreted, the procedure was unnecessary, that he had stumbled into a system that is “built to treat templates, not the pile of combined oddities and typicalities that comprise a sixty-year-old human being.”

He notes that the MRI image files were stored on a CD that his gastroenterologist couldn’t open and that he himself couldn’t read, because they were stored as Windows binaries, and Doc has only Mac and Linux PCs. He asks “Why weren’t the image files in an open format that any machine can view?”

The answer came from one of the many doctors that came by my room in the course of my eight days in the hospital. He said that the health care system is collection of closed alliances between large providers of equipment, software systems and institutional customers. These alliances are closed and proprietary by nature and policy, and account for much of the friction built into the overall health care system — not to mention injuries and deaths due to poor communicating and data sharing among systems and practitioners….He also gave big kudos to Google for “sticking it to the whole industry” with Google Health, a service built to provide individuals with a way to compile and control use of their health-related data.

Doc goes on to say he believes “the best way to fix health care is for patients to be the platform for the care they get from doctors and institutional systems.” What does he mean by “platform”? Doc mention’s Joe Andrieu’s post about VRM (vendor relationship management) describing the user as the point of integration: “When we put the user at the center, and make them the point of integration, the entire system becomes simpler, more robust, more scalable, and more useful.” Point of integration is what Doc means by platform.

Consider this restatement:

When we put the patient at the center, and make them the point of integration, the entire system becomes simpler, more robust, more scalable, and more useful.

This is close to the philosophy of the e-Patients Group. Founder Tom Ferguson described e-patients as “individuals who are equipped, enabled, empowered and engaged in their health and health care decisions.” They’re not passive consumers, but equal partners with providers and institutions.

As a longtime advocate of open technology, Doc clearly understood that this kind of participation requires open access to information. When health information and systems are considered proprietary and closed, healthcare systems are constrained and inefficient; crucial information is limited to a few limited channels. The Health Commons project suggests how closed, proprietary systems occlude research and constrain the quick and efficient development of new therapies. Doc quotes Joe Andrieu’s suggestion that we think “of humans as the environment and vendors as the ants.”

Instead of humans visiting a bunch of isolated data silos, invert it so that vendors are visiting stationary users–or their stationary data stores.

Now, instead of a bunch of individuals running around leaving a disparate data trail which is hard to keep track of, the individual represents the digital environment where data is stored by vendors. When the next vendor comes along, the data is there, available for use, without the need for complex integration, processing, or systems maintenance, just like the environment is there for the next ant to come along, allowing that ant to do what they do without a complicated brain or sophisticated map of the territory.

Andrieu applies this thinking to the healthcare system:

What if instead of individual, isolated IT departments and infrastructure, Doc, the user was the integrating agent in the system? That would not only assure that Doc had control over the propagation of his medical history, it would assure all of the service providers in the loop that, in fact, they had access to all of Doc’s medical history. All of his medications. All of his allergies. All of his past surgeries or treatments. His (potentially apocryphal) visits to new age homeopathic healers. His chiropractic treatments. His crazy new diet. All of these things could affect the judgment of the medical professionals charged with his care. And yet, trying to integrate all of those systems from the top down is not only a nightmare, it is a nightmare that apparently continues to fail despite massive federal efforts to re-invent medical care.

Doc goes on to quote Fred Trotter on the vast and growing body of healthcare records for any individual, how crucial data can be buried in the stacks, how “our ability to generate medical information has vastly outpaced our methods for handling that information.”

To have true independence and control, we need access to all of that data, and as doc says, we need to be the “point of integration for the health care we get, and the point of origination for controlling that care.”

For patients to become platforms, we need more tools and capabilities that are native to the patient. All of us need to be able to walk around the world with the ability to jack into any health care system and drive it. How? I don’t know yet. I’m still new to this. But I do know that these are capabilities we need to add to ourselves, as independent drivers of health care services. And that these must be based on free and open standards and code.

The new health care infrastructure must be built on independent and autonomous patients, not on systems that surround and subordinate patients. Once it is, the systems will be vastly improved, and far more profitable for all.

“The new health care infrastructure must be built on independent and autonomous patients, not on systems that surround and subordinate patients. Once it is, the systems will be vastly improved, and far more profitable for all.”

“Health 2.0 is participatory health care. The combination of content and community enables the patient to be an active partner in their own health care and the citizen to be an equal partner in improving the health system.”

These 2 clearly related concepts would have seemed so radical when we all started working with Tom Ferguson on the white paper that generated this blog! It is amazing how fast the social mindset is changing. As usual, there is nothing like a broken system to generate deep innovation and social evolution.

“I am no expert in this area but I asked around. During my cancer adventure last year, my own scans were given to me on CD by my hospital in the DICOM format, which I’m told is an open standard, with free viewers including Linux and Mac: http://www.sph.sc.edu/comd/rorden/dicom.html.

“Each CD I got included a (mediocre) Windows viewer, sans documentation. I don’t know what they would have said if I’d asked for a Mac or Linux version. Seems clear that they ought to at least post all the viewers on the hospital site, and have every doc know how to read it (and where others can get the readers).”

The above doesn’t in any way invalidate anything Doc said. Rather, it may be an extreme shame that an answer may have been closer to reality than anyone knew, and it’s a shame that it didn’t occur to people to TELL the patient how to USE the data.

Absolutely splendid discussions – thank you e-Dave for sharing this with me. For the past two years, while creating Patient Vanguard, we have felt alone out here talking about the need for a Patient-centered approach to fix our current Health Care Systems. Reading these comments, I feel like the cavalry is coming over the hill! Now, if this thinking can be actualized.

For the past nine years I have been a Caregiver, and Consumer Health Care Warrior (I know this label is a bit much – but anyone who has navigated the system knows exactly what I’m talking about, and why you do feel like a warrior). Although I’ve met many well-meaning Health Care Providers, I’ve never participated in a more broken, and unaccountable business.

Yes, putting the patient, (and their families) at the center (or making them the “platform”) will be the key to fixing this mess. But, we must be mindful that while the technology considerations and solutions will arm patients with the information they need to navigate the system, to effectively engage with their Health Care Providers, and help them achieve the best Patient Experience and treatment possible, with technology we are primarily addressing the Medical Information management issues.

There are two important components that must occur in tandem to our critical technology considerations, and help drive our technology developments:

1) First, the availability of consistent and predictable Care Process Standards and their managment, or at least a better understanding of the ones in place. Why? Because the Health Care industry needs almost an ISO approach to the construction of treatment and its delivery, along with the measurement of care quality and safety, and the evolution of Best Practice. Many in Health Care do not believe this is possible, and it may be tough, but it has been done before in industry after industry. Standards pave the way. Coming from a background where we commercialized technology, it’s hard to imagine that in Health Care, within the same community, Hospital A, B, and C might treat and manage the same patient differently, yield different treatment outcomes, yet each institution might be paid for their service and its outcome identically, whether the patient lived, died, or limped away. In many other industries, these “companies,” quite frankly would be put out of business.

2) Second, we need the ongoing development, and momentum of a Consumer Health Care Industry (and movement) – with products and services developed for Patients and their families – this is key. Until patients, and their families understand the need in advance of treatment, and are educated, we won’t see the demands for change in patient treatment and experience management, we’ll continue to get what we get. The good thing is the movement has begun.

Thank you for the marvelous, insightful postings. I helps me stay focused on my mission, and inspired to be a part of this critical movement!

Susan you have hit the nail right on the head! AND, I think you have added a viewpoint that is very much needed in this brief discussion of Doc Searls’ commentary. This is the key counter-ballance to what I perceive in this thread as starting to get too obsessed with the way technology can 1) “enable” and even 2) “model” the improvements in care that we need to promote. Said another way, “it’s the people, stupid”, not the technology.

With that in mind, I see your ideas a very anthropological, and sensitive to the issues of the people who have roles in this system. Much like congress, another famously BROKEN system, our temptation is to throw the bums out, and start over. We can’t do that with congress, and we can’t do that in healthcare. A complete revamp of the information architecture overnight, with all new roles for providers and patients, just isn’t possible. Yes, aggressive remodeling is needed, but we have to start with what we have, and move somewhat incrementally. The way I’m reading the thread so far, is promoting a draconian approach.

I can’t believe I’m writing this actually. I hate being incremental. I guess I’m feeling the pain for what will happen if we turn all our present providers into technicians. (I’m on a roll about roles these days). We’ve spent a lot of time in this blog talking about the patients, and not enough about the new roles of nurses, doctors and other clinicians.

I’m curious as to why when everyone talks about participatory health care, the physicians and other care providers aren’t seen as empowered participants.

You know what I want? I want brilliant freakin’ motivated smart doctors empowered to do brilliant freakin’ things for me.

Patients may be at the center (hey, as a firstborn I’ve been that way all my life) but I want every single doctor, nurse and floorscrubber (and administrator) I encounter to go home that night correctly feeling that they just did something amazing that day.

Gopal’s statement gets to the biggest surprise for me as I’ve spent more time talking to physicians – the extent to which they’re not in control, but answerable to hospital and clinic administrators, insurance companies, regulators, etc. Not hard to lose the ‘human’ in a heavily bureaucratized environment. And given the complexity of regs and economic considerations, I’m not sure where we should start.

I don’t think we should lose track of what our main goal is. We are not here to reform and fix every problem of the healthcare system.

I understand that doctors are not happy with their work environment but this is NOT something we can have a real impact on. OTOH we can definitely have an impact on how doctors are going to interact with patients and view them as equals in the patient-doctor relationship. That is already a lofty goal and as Susannah wrote earlier:

Gilles, with ALL respect, I do think we (the patients and this blog) can have an impact on the role doctors play. If my instincts are correct, the root cause of today’s situation is that the real go/no-go power is in the hands of some odd player, and it never would have been designed that way.

For years I’ve heard doctors talk about having their recommended treatments rejected by insurance office staff who have no medical training at all and aren’t even able to discuss the indications for this case being outside the norm. That’s powerlessness.

I don’t know – this wouldn’t be the first time your experience and instincts have out”smart”ed mine. I do know, though, that if I’m going to be in charge of my care, I want my chosen doctors to be authorized to do their job – to exercise their best judgment.

I can’t believe I am being forced to take on the mantel of clinician defender and apologist!. Me, a major rabble rouser among my colleagues! Nevertheless, the opportunity to disagree with Gilles is too attractive (and in the process agreeing with Dave? Yikes).

Gilles says:

“I understand that doctors are not happy with their work environment but this is NOT something we can have a real impact on. OTOH we can definitely have an impact on how doctors are going to interact with patients and view them as equals in the patient-doctor relationship.”

The unhappiness and lack of control that clinicians of all stripes feel in the present workspace is not something we can ignore. If we do, we simply add another way they lose control and yet are still held accountable, further deepening the “learned helplessness” already part of our problem. While you may think you know all about the state of learned helplessness, refresh your memory. A key point is that not all people respond to the same situation with depression and feelings of futility. We can engage those who still feel good about clinical practice, and partner with them to show it’s actually more fun to work together. But a consistently confrontational approach (OK, I’m one of the worst offenders, I confess) will not move participatory medicine forward.

as you know I am never talking about confrontation as a means to modify the mindset of clinicians. Instead, I see myself as a constant irritant because someone needs to tell them repeatedly that the system has changed.

It is indeed very sad that the changes have taken place almost entirely without clinicians input, first because they denied the reality of the changes and now because they have to deal with issues of bigger financial/psychological importance to them.

As senior irritant, I would be tempted to say that clinicians, in general, do carry a significant responsibility for their original lack of involvement in the transformation of the medical system, from paternalistic to participatory. But it is never too late to join the movement and be an equal partner in the formulation of the necessary changes. None of us should ever think that we are advocating any type of “us vs. them” kind of interaction. I can only quote an ACOR user who said a few days ago: “The oncologists and all the oncology nurses and the researchers are the ones battling cancer. I’m just the battlefield.”

Susannah is both polite and effective and will probably formulate this much better.

“But, we must be mindful that while the technology considerations and solutions will arm patients with the information they need to navigate the system, to effectively engage with their Health Care Providers, and help them achieve the best Patient Experience and treatment possible, with technology we are primarily addressing the Medical Information management issues.”

Am I ever lovin’ this discussion. I can invision an app for the iPhone, iTouch, any smartphone, etc., which will allow a patient to view her EMR/EHR/PHR and to which she may respond.

We must get rid of this “us vs. them” attitude on both sides of the fence. There should be no fence, actually. When the only empowerment is in bureaucracy and VRM, then we’ve reached the bottom. I like Dave’s statement:

Me, too. I don’t want to disempower anyone (well, ‘cept maybe some bureaucrats and such…ahem…) who is working toward my health. I just want to be a part of the team.

Vendors CAN change any proprietary platform so that it integrates with a common interface. They are going to be driven to it anyhow as cloud computing becomes more prevalent. (Microsoft and Google are already there.) With the increasing use of smartphones (which some vendors actually call a type of “netbook”!), everyone will have the capability of accessing PHR’s. Ok, some say not “everyone”, but when even the homeless are using cell phones (which will soon all become smartphones or more), I beg to differ.

Along these same lines, @SusannahFox, @jayparkinson and I (@staticnrg) had a twittersation about rating doctors/medical care. Jay tweeted a link and said: “yep. next minor revision of hh will have this built in: http://bit.ly/R4ZzR their dashboards are awesome.” I believe that with an easy response/survey system like Jay linked, patients can give valuable feedback instantly which benefits all concerned. It does not have to be a negative system. Ranking/rating systems that we have now are used mainly by disgruntled patients and aren’t valuable. I believe they do more if a disservice than a service most of the time.

Most of all, if we don’t consider the role of the physician in all this, we are going to lose valuable, front-line PCP’s, pediatricians, and family doctors. It is already happening, and we need to keep that in mind as we work towards participatory healthcare.

If you want to see Healthcare\HIT stagnate for another few years to decades, keep throwing ARRA\Stimulus\HealthCare reform money at and around the EMR vendor space. No other industry is as backwards and behind the times as HIT, from proprietary (and idiotically technically architected) systems to a sales cycle that focuses on locking the customer in, not on sharing of information across the continuum of care.

And please, never believe HIT has a standard – HL7 – it doesn’t. HL7 is a to standards as gerrymandering is to politics.

Technology\standards aside, the other revolution that needs to come is to move away from seeing healthcare as being episodic and to see it as a longer continuum, not a cycle, but a thread that beings at life and ends at death, with an educated patient involved with their own care.

There’s a LOT of smart, willing doctors, nurses and patients, they’ve only got THEMSELVES to blame for not banding against the idiocy of the healthcare marketplace and insisting, demanding on processes and solutions that are patient empowering.